30. May, 2003

Dear PJS friends,

The recent PJS newsletter received great response from PJS folks and PJS medical specialists. It's been wonderful to hear from several of you. Here is some recent news that might interest you.

Updates made to Peutz-Jeghers Syndrome website
Visit the PJS website at www.peutz-jeghers.com. The site includes international resources.

Hereditary Colon Cancer Association
The fall 2003 conference, the title of which is Hot Topics in Hereditary Colorectal Cancer Syndromes, will include several presentations on PJS. The dates haven't been set, but the location will be in Southern California. Contact them through their website at www.hereditarycc.org/index.html. Or telephone them at 1.800.264.6783.

Given Imaging Capsule - Burke - Cleveland Clinic, Ohio
A trial comparing the Given Imaging capsule with push enteroscopy is underway at Cleveland Clinic. The researchers need more participants with PJS. Contact Jan Santisi, R.N., at 216.444.8836 or 1.800.223.2273, ext 4-8836. Visit www.clevelandclinic.org/gastro/colon/trials.htm and www.clevelandclinic.org/registries/inherited/pjs.htm.
*** STUDY ENDS SOON, ONLY THREE MORE PARTICIPANTS NEEDED. ***

PJS data base study - No travel necessary
Researchers in Germany are collecting clinical and molecular biological data from PJS patients throughout the world to determine the course of the syndrome, screening guidelines and treatment options. Contact Dr. Tilman Vogel at Tilman.Vogel@med.uni-duesseldorf.de (Yes, he speaks English).

PJS/COX-2 inhibitor trial in Germany
Dr. Vogel's group is also planning a COX-2 inhibitor trial. Travel may be necessary. Contact him for more details at Tilman.Vogel@med.uni-duesseldorf.de (Yes, he speaks English).

Peutz-Jeghers Syndrome online support group
People with PJS, their friends and family members are welcome to join our free online support group. Members send and receive e-mail through a listserv which distributes it to our 130+ members. To join or rejoin us, go to listserv.acor.org/archives/pjs.html and follow instructions to join or leave the list (change settings). If mail volume is a problem, you may want to subscribe digest mode for one e-mail daily or even go nomail and use web access for the group.

You are welcome to share this e-mail with friends, family members, physicians and others interested in PJS. If I can be of any help to you, let me know. I am happy to do research, send messages to the group or make introductions. If you'd like to send me an update, please do, I'm happy to hear from you.

Sincerely,
Stephanie Sugars
pj4steph@aol.com
Peutz-Jeghers Syndrome
Mailing list manager & contact

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Update: 02.Jan.'04